My med onc visit was yesterday. It was supposed to by my third cabazitaxel chemo treatment. However my psa is 41, the highest its ever been. So the chemo is obviously not working and I've stopped chemo. Docs said that clinical trails are the next step in my path. I have already completed zytiga, xtandi, & 6 rounds of taxetere. Pretty bummed at this point. Thought I'd get a longer run on chemo. I have bone mets mostly in pelvic area and couple on spine. Currently take hydrocodone to mask pain at night to sleep. Lymph nodes in chest area are also now involved which occurred while on taxetere. My daughter is getting married in September and had hoped to be there but not sure now.
Looking for advice on clinical trails. I know about clinicaltrails.gov and I guess I just do my own research, right. Anyone know if Roswell in Buffalo, NY is conducting any trails?
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charmander
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There is a cancer center in Cooperstown. They run critical trials under supervision from elsewhere so look into that. Much closer to Rochester. I think they work under Tufts? In any case, at least some visits/maintenance might be able to be done closer to home. Bassett is the health care system.
Good luck, and keep a super positive attitude to get to September! Attitude can make a difference!
Hi Charlie, Did they decide cabitaxel was not working purely on psa and not on scans? I had heard sometimes you get a flare early on in chemo treatment , and later a reduction. What was the previous psa? Here is a list of trials in Buffalo, It did not look like much, perhaps the list from Baltimore Tgc1 posted is better . clinicaltrials.gov/ct2/resu...
Have you had Genetic testing? If not , You should , it could line you up for new agents if found you do have a mutation. Another thought is sometimes chemo can resensitize the androgen receptor to xtandi, talk about trying that for a month while you are waitiing for results from genetic testing. I believe you can get genetic testing now with just a blood sample. I find , as I am in same boat with you doing cabitaxel, that there are not a lot of trials we qualify for, I just checked the ODM21 trial at Roswell and it seems prior xtandi is an exclusion, I may be wrong read it for yourself on the list I sent.
Dan, the ODM-201 trials are "early use" and ANY treatment is an exclusion. Really sucks for the rest of us. I'm hoping they do another trial for MCRPC patients who need it most.
Dan , I was told that my financial contribution for genetic testing thru Foundation One would be $1700 with a 50/50 chance that a mutation would be found and that there was a treatment for the mutation. They biopsied some lymph nodes for material. I'll ask about the blood test version. Looking back I'm thinking that I'm worth $1700.
I have received several promising leads on clinical trials from responses to my post. Would you like me to forward them to you as well? Where are you located? I'm in Rochester NY.
Charlie, I am quite certain Foundation 1 will forgive bill if one is not able to pay, but yes you are far more than 1700. We are close, I will send a private message. My last psa was 120 and down from high of 220 after radiation to pelvic bones and prostate , and lymph nodes in pelvic radiation caused it to flare to 220 in December
Thank You
Dan
If most of your mets are in the bones, Xofigo might be a good option for you. You'll have to make sure your blood counts are good and keep an eye on them.
Another promising agent is LU177 PSMA. As far as I know, it's still not approved for PCa here in the US, but many are going to Germany for treatments and paying themselves. It's a very expensive treatment though. You also have to make sure your PCa has a good expression of PSMA which is where the agent will be directed.
I was looking for a clinical trial her in US for lu177. I've heard the treatment cost is $8000 plus travel. I'm asking doc about Xofigo, not sure why we haven't discussed it before.
thanks
Here's a link to some trial information. Not sure if it's still open.
The Lu-177-PSMA trial costs about $9,000 out of pocket and would require several trips. It might be cheaper to go to Germany if you can stay there awhile. Closer to home, MSK is testing a new radiopharmaceutical that may be better called I131-MIP-1095:
Xofigo would be a logical next step, as would Provenge. Xofigo is being combined with an immunotherapy in some trials, which would be a particularly effective combination:
I don't have any additional trial information, so I'll add my support and say that I've always appreciated having things to look forward to (to live for?). I hope you'll be at and participate in the wedding. Fight, fight, fight, my friend.
I cannot offer anything more than my prayers and moral support for what you are going through. I am in the earlier stages of the disease but it seems always to elude treatment in the long term. I have had a RP, six-rounds of Taxotere with Lupron for six months. within 7 months my PSA was rising rapidly with doubling time of less than two months. This combined with a Gleason of 9 meant I was "biochemically recurrent". This is their way of saying " We know your cancer is systematic but we have no clue about where it has gone until you have symptoms".
I have two daughters, one is graduating from medical school in June and my youngest is starting university in September after a very rough during her teenage years. I see my future in your story and those of many others. I think it is important to consider not just treatment options and trials but how you spend the time you have. Going to your daughter's wedding is a great motivator but don't forget to really spend all your time in as meaningful way as possible by yourself, with family and friends, starting now. Don't just keep fighting, keep living!
I hope you find whatever you need and want and that you have a blast at you daughter's wedding!
dmt, you're right about keeping living! I've been doing pretty well with that so far but with my latest news I've slipped to keeping my eyes on the horizon instead of my path. Thanks for your insight.
My psa rose after my RP too. My gleason is 8. I had a sodium flouride pet scan to look for really small bone lesions. We found 3 in my pelvic area. Do pain whatsoever. I only understood that cancer was inside me because that was what the doctors told me. led a normal life with Lupron, Xgeva, Zytiga & Xtandi for 3 years. Some fatigue and loss of strength and some memory loss. All were managed easily. Scared to death of chemo but turned out to be few side effects for me. Mostly fluid retention in my legs and feet, numbness in feet, hair loss and fatigue for a couple of days after treatment. The cabazitaxel had no side effects.
I too see myself in others stories. However while treatments may be the same the time that your body responds to each one can vary. I've heard of men getting years from Zytiga. My knowledge that my life will be shorter than I had expected has also given me a clearer sense of purpose for the rest of my life. I speak from my heart, say no more often, don't spend time with negative people, create memories and make experiences. Rather than leading a mediocre life for many years I am living a rich and full filling life for a shorter period!! I now know the value of living, really living.
Seeing you at your younger daughter's graduation from university!
Sounds like myself other then I got no time from Zytiga Chemo, casodex. Did ganetic testing and found a mutation that explained why. Started Lymparza 2 wks ago. Good luck
Any unpleasant side effects from the Lynparza? My husband is starting it also about to start it, and so far, it sounds like it's well tolerated. Good luck to you. I hope the Lynparza does the job!
Hi, my name is Lynn....my husbands ordeal sounds very similar to yours. i know that everyone's cancer is unique, but with great disappointment this past summer, with 10 rounds of taxotere chemo, weeks of radaition, PSA started rising right away . Put on Zytiga, Xdandi and that didn't work, Sam also has bone mets and LN involvement. A month ago he had a 1.3cm cancerous LN removed.Sam is goi g for a cat scan this week coming and back to the oncologist. The dr. Just toLd us yesterday that she wants Sam to take a cancer pill either Sunitinib or Cabozntinib. Dr. Who that is on this site sent me information on the one cancer pill, sound promising, hope that Sam care tolerate the side affects. We shall see. My husband did not qualify for Keytruda, maybe you see it advertised on TV, for lung cancer they could it's very successful for prostrate cancer. Sam did not have the mutation for Keytruda, the oncologist was hoping he would.
Dont give up there are many treatments out there and more in the making everyday !! You will be for your daughters Wedfding and here for many decades!!! My husband started this journey at age 65 he is now 74 young. Hang in there and best wishes coming your way. Keep me posted and all of us here! We are all here for you!!
Sounds like I should get genetic testing done and look into Keytruda!! Thanks for the tip. Also I have not heard about the cancer ills you mentioned that Sam is starting. I'll talk to my doc about those as well. Hoping side effects don't interfere with Sam's quality of life too much. I'll be thinking of him and sending positive energy his and your way. I started my journey at 55 and am now 59.
Hi, Happy to hear back from you. I don't know if your cancer is as advanced as Sam's, but if so the Keytruda was the treatment that Sam's oncologist was hoping he qualified for after the biopsy results. Sam did not, as I mentioned have the mutation needed for the Keytruda ,but qualified for the two chemo pills Sunitinib, and the cabozntinib. They were clinicial trials and now are FDA approved. Like you I never heard of them either.?? I was very disappointed about Sam not qualifying for the Keytruda, I've heard so much positive info. on it. Sam way back did not mind casodex but did struggle with some side affects while being on Zytiga and Xtand Sam was on both before taxotere chemo and put on Zytiga after chemo. Didn't help him before nor after chemo. I'm just grateful that Sam did not have to go on chemo every week for the rest of his life. His oncologist said it a rough chemo and worse side affects than taxotere. Please keep me posted after your appointment. Just remember they will keep trying different treatments until they hit on the one that works best for each one of us.
Know that you have everyone's support on this site and you are not alone!! Like Dr. Who says we are extended family.
I don't have any answers that others can't offer, but I'll sure be praying that you get to walk your daughter down the aisle I'm September! Hang in there.
You didn’t mention lupron or Xgeva. They have kept my PSA down. And yes as one posted my PSA rose slightly when I started chemo. But then went Down from there
Yes I am currently receiving Lupron on 3 month dose and Xgeva monthly. We also thought my psa rise at first was just the flash from chemo but after 9 weeks of steadily increasing values we determined chemo was not working.
Cornell in NYC is currently doing a Lutitium 177 Trial. Contact them. Also I would try the BAT Bipolar (high testosterone) Androgen Therapy at Johns Hopkins (trial) or get high testosterone treatments at Bob Leibowitz clinic “Compassionate Oncology” in La. they have a website.
Best of luck. The testosterone treatments at least raise your testosterone levels and you feel good for a change!
I'm being treated for melanoma stage IV lung cancer using Keytruda with very promising results. Hopefully you'll find a trial soon. Try MSKCC in NYC not too far from Rochester (Chili Avenue to airport) NY. You'll be giving your daughter away in September, no sweat.
I am so sorry that the Chemo wasn't working. I am just wondering if it would be worth getting CT and MRI done to see if the disease was really not responding to treatment. We all know that PSA is one but by far not the only indicator for disease progression. So, instead of stopping Chemo immediately, I think you should get scans done if this hasn't already happened. But then maybe it has because you are talking about lymph mets involved now as well.
Don't give up hope. There are other treatments you can try, maybe even other Chemotherapies or combinations of therapies.
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